Amy Volume's BIRTHDAY WISH - Year 4!
Help me celebrate my birthday by giving a gift to a child receiving in patient treatment at CHEO (Children’s Hospital of Eastern Ontario). All proceeds go directly to CHEO’s Child Life department who provide kids with wonderful and much needed distractions in many forms: books, toys, craft kits and other forms of entertainment.
I’m turning 36 on April 25th (woah!) - help me celebrate by buying a gift for a kid receiving in patient treatment at the Children’s Hospital of Eastern Ontario, aka CHEO! All money raised goes to CHEO’s Child Life fund and you can learn more about the fund by CLICKING HERE.
Launched in 2019, we’ve raised $5,000.00 and I”m hoping to add another $2,500.00 in 2022. This is a mighty ambitious goal but, as long as I have a birthday, I’ll keep trying to provide entertainment and levity to those who deserve it most: kids in hospital.
This cause is very important to me. I am a CHEO kid. I spend a lot of my childhood in hospital, diagnosed with rheumatoid arthritis at eighteen months (1988) it was Sick Kids in Toronto until CHEO built their own Rheumatology Clinic (which I believe is the Infectious Diseases clinic in today’s terms).
As you can imagine, I missed a lot of school - never did make it on to any teams (sporting, social or otherwise) - in fact, I missed my own highschool graduation due to joint fusion surgery.
When you’re little and in need of a smile, CHEO’s Child Life department delivers. Please consider giving a gift to a child to help me celebrate my birthday. This fundraising effort is ongoing, year round. If you cannot donate at this time, there is no pressure! There are no deadlines! I just ‘get loud’ about it every April because that’s when I celebrate my birthday.
Help me celebrate by making a financial donation OR by buying a gift from my Wish List (will be delivered to my work address and brought to CHEO by me):
The photo above this text is of me delivering gifts & money to CHEO. This was my first year buggin’ you for donations. If you consider the average gift costing $25, to date, we have collectively given over 200 gifts to kids (aged 0-18) receiving in patient treatment at CHEO.
Hip Surgery Needed
My quality of life is in decline so it’s time to ask for that hip surgery… only the question can’t even be heard right now because our healthcare system is so stressed due to COVID hospitalizations that I am one of thousands of Ontarians being temporarily denied care.
January 15, 2020 I meet with THE hip surgeon. He’s the best in town and does pediatric cases (this simply means cases in people who are young-ish). He tells me that I will require a total hip replacement in my right and we could try a partial in my left but to call in 2 to 10 years (approx.); as soon as my quality of life declines.
Well, almost two years to the day, I called to get in the surgical cue. I know that things are being cancelled or postponed right now due to the pandemic and the strain on our provincial health care system. I simply wanted to get things in order and be on his radar. I am in a great deal of pain and haven’t slept in a long time because laying down causes the pain to spike.
I am doing my best to stay active, which kinda makes the pain worse but I know that if I don’t keep moving, I will lose the ability to move. Period. So I have to kinda continue the cycle of pain - activity - pain - activity - pain because I work, have kids, would like to carry on as normally as possible. Just bought one of those chariot style strollers so that I can stay active. It holds more cargo (and children) than a walker and I’m not needing my wheelchair yet.
This morning I phone the Ortho unit at the hospital and was told to call my surgeon’s office. So I called them and was informed that I need Ortho to ‘assign papers for surgery’ to me. Called Ortho unit back and was put on hold, then told that they don’t really know how to help me at this time and that I should try calling again next week for more information.
The hope in being heard by my care team is all I have keeping me from breaking.
I am trying my best to stay active. I am trying my best to keep smiling. This is not a life saving surgery. I am privileged to have doctors, to not be in a terminal-care-related situation and to be able to work from home.
No one knows when the government is going to actually help out our underappreciated healthcare workers who have been struggling for a long time (before the pandemic, even). These people need to be heard, supported and paid.
This is where we are at in Ontario:
Ontario Temporarily Moving to Modified Step Two of the Roadmap to Reopen - January 03, 2022 - from the Office of the Premier: In addition, on January 5, 2022 the Chief Medical Officer of Health will reinstate Directive 2 for hospitals and regulated health professionals, instructing hospitals to pause all non-emergent and non-urgent surgeries and procedures in order to preserve critical care and human resource capacity.
Ontario tells hospitals to stop non-urgent surgeries, procedures to preserve critical-care capacity - January 05, 2022 - from CBC News, Muriel Draaisma:
In the directive — issued to "regulated health professionals or persons who operate a group practice of regulated health professionals" — Moore says the following steps are required immediately:
"All non-emergent or non-urgent surgeries and procedures should be ceased. Emergent and urgent surgeries should continue, in an effort to reduce and prevent patient morbidity and mortality.
All non-emergent or non-urgent diagnostic imaging and ambulatory clinical activity should be ceased, unless directly related to the provision of emergent or urgent surgeries and procedures or to pain management services."
And Just Like That... Woke with Jokes?
Sex and the City revival series And Just Like That… preaches ‘wokeness’ yet uses ableist language. In S1 E5, ‘Tragically Hip’, Carrie Bradshaw refers to arthritis as ‘Old Lady Disease’. I was diagnosed at 18 months and am sick of being misrepresented. My pain isn’t a joke.
I was diagnosed with ‘Old Lady Disease’, as Sex and the City’s Carrie Bradshaw (played by Sarah Jessica Parker) calls it, when I was a baby. Eighteen months old. I’ve been dealing with this ignorance for too long and it’s time for the world to wake up.
I’m cringe watching the HBO revival series, And Just Like That… as a former SATC fan. I know that all language can be problematic and, working in media, I get that there are bigger things happening in the world to get upset over.
When you have a captive audience - don’t do further harm towards a disadvantaged group while preaching ‘wokeness’.
Would Carrie have said that in episode one to her coworker who uses a chair? Would the writers or SJP herself say, ‘too bad about that old lady disease’ to a toddler on chemo puking their guts out to salvage tissue? I doubt it.
Below is a Twitter thread that I posted while catching up on the ‘Tragically Hip’ episode. I had to pause it to react, in the moment, on social media (as one does)… Let it be known that I am, at age thirty five, currently waiting on double hip replacement surgeries and a joint fusion/corrective surgery on my right foot. I had my left done at age seventeen.
“It’s arthritis, right? I have OLD LADY DISEASE in my back?” - Carrie Bradshaw on S1 E5 of And Just Like That…
@HBO @AndJustLikeThat do you have disabled people on staff? This language is hugely upsetting. I was diagnosed with RA as an infant, Hi!
This was one of my many, many intravenous drugs. Chemotherapy is a popular method of treatment to fight Rheumatoid Arthritis.
When you spend a significant chunk of your childhood in hospitals, you become well acquainted with the playroom!
Splints on my wrists were intended to keep my joints from deforming as I grew. I know they didn’t stop my range of motion from deteriorating. I have some deformities now as an adult, so I’m not convinced splinting works.
Juvenile (Idiopathic) Rheumatoid Arthritis patient (me) pushing my IV while out for a stroll in hospital. Ever try to get dressed when you’re attached to a pole? It’s not easy.
Carrie’s comments aren’t problematic to those who haven’t lived my life. Between chemotherapy, surgery, wheelchairs & chronic pain/fatigue, I also got heavily bullied for having OLD LADY disease.
Children get arthritis too.
You can’t take back those comments. They’re out there and echoed and echoed and echoed, reaching the ears of children who are very sick and tired and fading… More disabled people in media, please. PLEASE. I volunteer. I will consult with anyone (serious), for free, RE: ableism.
My whole life (like, til death) involves arthritis. It would be nice for people to accept that it’s not an OLD PERSON DISEASE. It’s rare in kids but it happens. I work in media & I want more representation NOW.
Note the swelling in my knees.
Using a wheelchair helps save energy and tissue damage. It also is helpful when I can’t walk.
My splints didn’t stop me from making the most of things!
At 35, I still use my wheelchair when I have tough days.
Arthritis has many forms. How anyone chooses to imitate, accept, react to any of its forms as they present personally or in someone close is fully up to that person. I’m not telling you how you should address the disease or it’s symptoms - I’m simply asking that you consider this diseases devastation to kids who already feel misunderstood, misrepresented and or ignored.
Here are some other things I’ve posted to educate people about autoimmune diseases and the misconceptions that create barriers in our lives:
Birthday Wish for CHEO
Last year I was inspired to dedicate my birthday to kids in treatment at CHEO. I know how long and boring those days can be in isolation - I think we can all relate, too, on some level thanks to this outbreak.
This year, things will be a little different. Yes. I’m still getting older on the 25th. Yes. There are still a lot of children, from babies to teens, receiving life saving (and life altering) treatment in hospital. Many are confined to small, isolated rooms. Some are cut off from their friends and family. Others have to miss out on normal kid stuff because they are sick.
To help make their day a little brighter, I decided to direct any and all attention from myself to them.
Were you going to buy me a card? Were you thinking of taking me out for lunch, dinner, a pint or a coffee? Were you maybe going to gift me a scratch card or cold hard cash (a classic granny move)?
If you answered ‘yes’ or ‘I was thinking of maybe doing that’. First, thank you! Second, please throw that money here:
This is my second year doing this for the kids and, working with the CHEO Foundation, I have made sure 100% of the proceeds go directly to FUN! Art supplies, craft kits, toys, stuffies, movies and other sources of entertainment.
Last year, I was blown away with all the support and gifts given for the kids. This year, I will not be accepting any physical donations in person. I do want to see the faces of those who ARE giving though, so please send me selfies of you with your BIGGEST smiles alongside any messages you wish to give to children in treatment.
This campaign will last the entire month of April. Please help me spread the word for our young friends self-isolating at our wonderful CHEO.
HUGE SUCCESS on the Birthday Wish Front!
Thanks to YOU - we delivered a whole lotta awesome to the Children’s Hospital of Eastern Ontario!
Toys, craft supplies, books, DVDs, cash and more were given to help put smiles on the faces of children receiving treatment at CHEO as part of my ‘Birthday Wish’ campaign.
I have decided to leave this campaign active. We have surpassed my initial goal (set at $1,000) but I would like this to stay active for ongoing donations. This will be an annual thing, so long as I have support of my employers, the hospital and wonderful humans like you.
Thank you for giving. Thank you for sharing. Keep this cause in mind, 100% of the proceeds go directly to FUN STUFF for kids (aged 0-18) at CHEO.
If you want to launch your own fundraiser the process is very simple.
Visit cheofoundation.com/donate, create your page and decide where you’d like the funds to go then get raisin’!
Mandy Arsenault, CHEO’s Community Engagement Officer, says she there are so many options for people to give back to the hospital “[ranging] from birthdays... fundraisers [things like] lemonade stands and bake sales'... i'm here to support them."
Mandy helped set me up to raise funds for the Child Life department. Here’s more information that could help you if you’re considering the same for your next birthday, event or in honour of someone who’s life was touched by CHEO:
Thank you!
Julie Anne Brown from Sotheby’s International Realty Canada
